If you try sometimes, you just might find, you get what you need.

There was an event this past week where many of my friends who have kids with Angelman Syndrome were gathering in Chicago. I bought a ticket, reserved a hotel, arranged for a caregiver, and was set to go. Then, I found a place to move in to. It was supposed to be ready a week before Thanksgiving so I would have two weeks plus the holiday to move. Well, the new landlord underestimated how much work needed to be done and the place wasn't completely ready until Thanksgiving, but I had already given notice that I would be out of my last place by December 9th, figuring if I had any cleaning left to do it could wait until I got back from Chicago. Then when I had taken two vacation days from work, I got sick. Then, I cancelled my trip to Chicago.

I really wanted to go to this event. At this event, some information was released about the success of a recently completed clinical trial of 24 patients. The papers have not been completed yet, but there are going to be subsequent trials. IF we have money to do them.

Not only was I going to be able to hear from Dr. Weeber and be able to ask questions, but I was also going to talk to someone who is researching behaviors of persons with Angelman Syndrome, and has extensive experience improving their sleep.

I was also, like last year, slotted to have a quick hand-shake, photo opportunity and conversation with a celebrity. Much like last year, except last year, the celebrity couldn't attend.

As well as meeting some of my friends for the first time, seeing some again, learning how to better address my son's needs, rubbing elbows with celebrities, and eating a lovely meal, I was also slated to sleep as long as I wanted to, for two nights!

There were amazing raffle items, such as a prop from Saving Mr. Banks, a football signed by Brian Urlacher, a guitar signed by Dave Grohl, Concert tickets to Ravinia, Football tickets, and even consultation time with a world-renowned Angelman Syndrome expert speech therapist, and consultation time with a literacy expert who is also a mother to a child with Angelman Syndrome.

I did not get to experience any of this first hand. I was left home like cinderella, with no transportation. I had a dress, but no pumpkin carriage that could whisk me away to Chicago in time, and still allow me to complete moving all my belongings.

This was not the first event I had to cancel. There have been many events I haven't reserved a spot for myself at, because I knew I just couldn't get there.

If only..... There is a long list of conditions that would have made it possible for me to go.

If only my son didn't have Angelman Syndrome and then I wouldn't even want to go to an event in Chicago in the month of December. I wouldn't need anyone to give me specialized advice. I wouldn't need to teach my child how to do everything. I would be worried about his clothes more than whether he could tell me what he wants to eat, or when he has to use the toilet. If only I was more observant, more "with it," then my son would be further along.

All I have left to say is that I want the cure for Angelman Syndrome even more today than I did yesterday. I NEED the cure for Angelman Syndrome. I am willing to put everything on the line for it. Call me crazy, I just may do it.